Tuesday, 21 October 2014

Welcome back. I hope you've got a nice cup of tea and a biscuit. This isn't a short one and you may need a suitable hypo-treatment ready in case the reading sends you low! And if you don't have diabetes just grab yourself a biscuit anyway, you deserve it.

First up I need to be very clear. I’m comparing an
apple with a pear here. The Freestyle Libre is being marketed as a Flash
Glucose Monitor that should be used to reduce the need for finger prick blood
testing. It is NOT being promoted as a Continual Glucose Monitor.

However…. For
me the lines are a little more blurred (time for a bad Robin Thick song?) as
the on screen display does show a line of blood glucose readings taken every
minute and averaged every 15. It’s measuring the same interstitial fluid that
my Enlite sensors use and I have to buy it privately, like I do for my CGM.
There’ll be corporate and licencing reasons I’m sure for Abbott to invent this
new terminology and this may become clearer over time. Or maybe it’s to make
themselves unique in the market? Who knows. Either way, to me it behaves more
like a CGM than a BM stick machine (off of the 80s) so my comparison is based
on that. The differences may become clearer as the review progresses below.

As I use a Medtronic Veo pump the Enlite sensor
utilises the screen of my pump to display all readings and graphs whereas the
Libre has it’s own handheld reader with display.

So let the comparison begin...

Cost (all prices ex-VAT)

Libre - Starter kit containing reader and two sensors £133.12. Reader is guaranteed for two years though should last longer. Subsequent sensors £48.29. 1st year cost = £1292.08 or £3.54 / day

Enlite

Transmitter and charger for £490 plus sensors which cost either £275 for 5 or £525 for 10. Transmitter lasts approximately 12 months and costs £350 to replace.

1st year cost = £3640.00 or £9.97 / day

Comparison

This is a hands down winner for the Libre. As a first
time user the initial commitment for four weeks of use is £133 compared to £765
for the Enlite. Postage costs for the Libre may come into play but as these are
unconfirmed and with rumours of a subscription discount these were ignored.

To be clear, over £1k a year isn’t cheap but it’s
certainly closer to affordable for occasional use with a lower initial outlay.

As an additional point, late last year Medtronic ran a
promotion where they gave you the transmitter and charger for free with your
first order of 5 sensors. Then the fourth box of five was also free after
paying for two more by the end of this month. Maybe this will be repeated for
new customers?

Score: Libre 4/5 Enlite 2/5

Calibration

Libre

Calibration is done in the factory at point of
manufacture. After this no further calibration is needed.

Enlite

After insertion the first calibration is done after
two hours. This is repeated every twelve hours of use. For most accurate use
it’s best to calibrate at a period of relatively steady blood glucose.
Obviously this can be tricky to achieve sometimes but in reality it’s normally
possible. I usually try to find a point after about 10 hours onwards.

Comparison

Another easy win for the Libre. The lack of any need
to calibrate the sensor meant it was up to speed after one hour rather than two.
As there was no need to recalibrate twice a day the challenge for finding a
winner in this segment was a little too easy.

Score: Libre 5/5
Enlite 3/5

Size and Appearance

Libre

For the Libre transmitter it’s easiest to describe it
as a white plastic disc approximately the size of a £2 or €2 coin. The
adhesive is entirely on the underside of the transmitter and for me this held
tight for the full two weeks (more on this later). The probe is underneath the
transmitter and is entirely hidden. The receiver can be described as the size
of a small light mobile phone with one small button on the front and a colour
touchscreen display. Charging is via a supplied, detachable USB cable.

Enlite

The Enlite transmitter is a similar size to the Libre
although about twice the height at its largest. The transmitter plugs into the
sensor which is underneath a small (5p size) piece of clear plastic. The whole
device is then secured using adhesive tape that sticks to the body and wraps
over the transmitter. In addition to this some more (provided) dressings are
used to secure the transmitter in place. When not in use the transmitter
‘docks’ in a charging device so that it is fully charged when in
use.

Comparison

As can be seen from the photos the ‘attractiveness’ of
the part stuck to your body varies between the two. The Libre could easily be
mistaken for a smoking patch and if you are more careful with its location than
I was, it can be easily hidden by a t-shirt sleeve. The Enlite is slightly
larger and more resembles a medical attachment. Having said that the clean
lines mean it isn’t overly ugly.

Score: Libre 5/5
Enlite 4/5

Setting Up / Insertion

Libre

To insert the Libre you place the applicator on the
skin and push down. The Libre is placed on the skin and a very small needle with
the metal sensor filament inside goes under the skin and then very quickly out
again. In a room of five people with diabetes who were trying out the sensor
none of us felt any pain on insertion. It was a surprisingly pleasant experience.
After this the first scan with the reader is done and a one hour countdown is
started. The accuracy of the sensor for the first 24 hours is not expected to
be as good as after that but I found no problems almost from the start. The
biggest negative for me on the set-up was the amount of hard plastic used in
the packaging and casing. This is probably necessary due to the factory
calibration but it seems a little wasteful.

Enlite

Insertion of the Enlite sensor uses the reusable
inserter. After placing the sensor into the inserter, place it against the
skin, press the button, release the button and hold for five seconds then
repress the button and lift off carefully. The needle is then left behind and
manually pulled out after putting the inserter down. There is a slight pain on
insertion that is similar to a painful injection or set change. After securing
down the sensor the Bluetooth transmitter is connected and secured with more
tape.

Comparison

The Enlite may be more environmentally friendly but sadly
the slight pain when compared to the Libre again puts it second in a two horse
race.

Score: Libre 4/5
Enlite 3/5

Ordering

Libre

All ordering for Libre is done using their online
shopping site that has now gone live. You can have a look here but please come
back if you click through to it! There is no need for any medical professional
approval for this device. This may be because of its role as a finger prick
replacement rather than as a CGM.

Enlite

Medtronic now have an online shop here where you can
order your CGM supplies once you’ve registered with them. If you are new to CGM
then you will require a letter from your doctor or nurse confirming that they
are happy for you to buy the device and will provide training for the first
insertion.

Comparison

Both systems appear easy although in fairness I have
used neither. The Libre was given to me at a previously mentioned meeting and for the
Enlites I’ve previously called the very nice people on their helpline. The need for
medical approval means a mark off for Enlite though.

Score: Libre 5/5
Enlite 4/5

Alerts

Libre

Alerts are where the Libre starts to behave like a
finger prick blood glucose test machine. As it will only pass the data from the
sensor to the reader when it is flashed. Any warnings of high and low are based
on the latest number available. An arrow on screen will indicate if this is going
up or down. Useful for easy reference. But that’s where the alerts stop. This
is an alert-free machine.

Enlite

Step forward Mr Medtronic it’s time to earn your
stripes! The Medtronic has advanced forecasting functions that work in
partnership with the Veo pump. I can set alerts to warn me if my readings are
dropping and rising quickly and also if upper or lower thresholds are set.
Timing controls mean that during the day my lower alerts are lower than at
night and my upper alerts are also slightly higher to take into account my
occasionally large post meal spikes. At night I run a much narrower band as
generally my levels are fairly steady when I’m asleep. Although I do not use
the predictive alerts as my hypo awareness is relatively good the slight nudge
I get when I hit a lower number of 3.9 is useful to just check that I’m aware
of my technical hypo and am treating it. Another feature of the Veo / Enlite combination, that is currently unique, is low-glucose-suspend when a low reading is reached. This
means that as well as the repeated audible and/or vibrating alarms the delivery
of insulin can be chosen to suspend to prevent a person with a dangerously low
blood sugar from receiving any more insulin. This is another feature that I do
not use but I have spoken with others who have used it. It can be potentially
useful for those who live alone and do not have anyone to check on them in the
morning.

Comparison

The CGM features of the Enlite win hands down here.
Before signing this section off though it’s useful to mention alarm fatigue. As
I mentioned below I don’t have all alerts on all of the time as repeated
unnecessary warnings can become so annoying that useful ones are ignored. The
Libre obviously doesn’t have this problem as it requires the wearer to actively
pull their readings instead of having them fed to the pump display.

Score: Libre 1/5
Enlite 4/5

Software

Libre

The software supplied with the Libre produces several
useful reports to show trends and highs and lows. Abbott are promoting the use
of the Ambulatory Glucose Profile (AGP) that it hopes will become a medical
standard. It is also possible to download a csv file of up to 90 days readings for
your own analysis. Every time the sensor is ‘flashed’ the reader downloads the
latest data to add to that already downloaded. Once 90 days worth of data is
downloaded it replaces this with new data. The reports that are run are based
on this flashed data. When created the reports are PDF files that are
created on the fly. It is not possible to create a report without the reader
being connected to your PC or Mac. A consequence of this is that reports cannot
be made of data that is over 90 days old unless you have downloaded the raw
data and create your own reports using Excel or another piece of software. Is
this a problem? I’m not sure. I’ll leave you to ponder that.

Enlite

The software the Enlite uses is through the Medtronic
Carelink website. As the data is coming from the pump it can also plot your
insulin usage and shows any finger prick tests taken using the
Bluetooth-connected blood test machine. The graphs are all very similar but the
addition of the insulin amounts showing boluses and basals is good extra feature. Once
the data is downloaded it is stored on the Carelink site for a very long time
(my data goes back to when I started pumping in 2011) and even if the pump is
changed the data remains and carries through in to newly generated reports. The
biggest downside for the Carelink software (apart from not working on Mac OS10
upwards) is that it is a reduced down version of the reports available to your
doctor or DSN when you go to see them. My hospital is predominantly Medtronic
and so data downloads are done when appointments happen and we analyse the
detailed charts together after I’ve done a little prep beforehand using the
much smaller ones.

Comparison

Two useful bits of software although the Medtronic
option wins for storing all the data online for access at any time from any PC
(or older Mac) without having to connect anything.

Score: Libre 3/5
Enlite 4/5

Screen Display

Libre

The screen on the Libre is very nice. Full colour and
touch sensitive makes using it very easy for me. How that works for those with
less sense of touch or finger control I’m not sure. The figures shown after
flashing are easy to read and in social circumstances it’s a very subtle
process that looks like someone just checking the time on their phone.

Enlite

A slight step backwards here for the Enlite. As it
uses the Veos screen which has been around for nearly ten years the age is
starting to show. It’s a monochrome display with a background light available
for when it’s dark. Due to screen size the graphs produced are relatively small
and hard to read. Having said that though they can be changed to show either 3,
6, 12 or 24 hour periods and also give a hard to read indication of basal rates
in those times. The key number which is the latest reading is easy enough to
spot though.

Conclusion

The Libre wins on ease of viewing but the Enlite runs
it closes because of the extra graphs

Score: Libre 4/5
Enlite 3/5

Accuracy

Libre and Enlite

And here’s where it starts to get to the important
bit. Accuracy has to be the key deciding factor in any comparison of a machine
that tests glucose in the body. During my six day direct comparison test both
machines had good accuracy for the duration. Previously I’ve experienced
occasional problems with the Enlite but none of that was visible here. The
difference came down to speed. For reasons unexplained by Abbott I found in this study
the delay between BG readings and the number on the Libre sensor was around 7 mins
with the Enlite following another 6 minutes later. It’s only fair to point out
the Enlite was on my stomach whereas the Libre was on my arm. Could this
account for some of the delay?

Another reasoning could be the frequency of the readings.
The Libre takes a reading every minute and if it’s changed since the last flash
it will update the number on the screen when it is flashed. The Enlite updates
the number shown every five minutes. If I’m trying to track a hypo treatment
those five minutes can last a long time.

The Libre claims to have a higher clinical accuracy
level than the Enlite and whilst this was slightly evident it wasn’t so much
that it was a reason to doubt the Medtronic product.

The winning factor here has to be the minute by minute
updates that are possible with the Libre and also that, in my limited
comparison, the numbers were closer in time to BGs taken to compare.

As a footnote it’s worth pointing out that others
using both systems have experienced occasions where there is a significant
difference between the number shown and the BG taken. I can only report on my
experience but I recommend reading other reviews for comparison.

Score: Libre 5/5
Enlite 4/5

Convenience

Libre

The convenience of wearing was a big plus for the
Libre. Whilst I knew it was there it wasn’t a pain at any point and it
certainly put up with a fair amount of knocks. To take a reading I needed to
pass the reader over the sensor. As this can be up between 1cm and 4cm away
from the sensor, wearing coats and jumpers didn’t cause any problems. Doing
this in public was unnoticeable and very quick to read. The downside is that as
a FGM during the night if I wanted a reading I’d need to find the reader, flash
and then find the number. Not hard but slightly more inconvenient than with the
Enlite.

Enlite

For some reason the design of the Enlite with a sensor
and transmitter seems to make the device a little more delicate and it certainly
doesn’t take knocks as well. A previous sensor was pushed off after only one
day and I’ve only just stopped crying at the expensive mistake that was! Out
and about use is really good though. The Veo looks like a pager with a wire so
checking a reading doesn’t look that strange and the backlight is helpful in dark
places. No need to flash means no unusual movements at all. Although as
mentioned above this wasn’t really a problem with the Libre. It did win on
middle of night checks though. As the Veo is a tubed pump finding it is always
fairly easy by starting at the site on my body and following the tube! After
that a quick button click for the light the check is complete. Much quicker
and easier.

Comparison

All in, both were good in parts.

Score: Libre 4/5
Enlite 4/5

Stickyness

Libre

This little beast stuck tight for me. Solid all week
and it needed a good tug on day 14 to yank it off. I’m sure it would have
lasted longer if the software would have let me. I went swimming and running
with no issues at all. Others have experienced some problems but not for me.

Enlite

This has always been a downside to the Enlite. After
much use I’ve now taken to using lots of clear tape on day 1 and this keeps it
secure for the duration. The nice marketing pictures show a lovely stomach with
only once piece of tape keeping it in place. I’d like to have seen it on day 6!

Comparison

A significant win for the Libre here due to only
needing the supplied underneath adhesive.

Score: Libre 5/5
Enlite 3/5

Availability

Libre

Currently licenced for over 18s only. I know there’s a
huge demand from the U18 market so hopefully the relevant licence isn’t too far
away

Enlite

Available for very small children upwards after
approval by their healthcare professional.

Score: Libre 4/5
Enlite 5/5

Overall

It would now be easy to count the marks in each
segment and declare a winner – don’t worry I will do that in a minute. But I
think that would miss the point here. We’re talking about two very different
systems that both manufacturers are keen to keep separate too.

The Enlite does what it’s designed for very well but
it’s limitations are that it needs a Medtronic Veo pump for it to be useful.
But when it does have one to link to the low glucose suspend and single reader factors are
huge pluses.

The Libre however can appeal to a much, much larger
market with MDI users being able to take advantage of the comparatively cheap
option to look at basal rates of long acting insulin and also insulin ratios
for short-acting. This is a huge market that CGM has always tried to get into
but struggled.

For me the design of the Libre is outstanding in that
it doesn’t look like a medical device and can sit securely under a sleeve (if
placed correctly!) totally out of site.

The speed of readings is a definite plus point but
with goodish hypo-awareness those six minutes become less significant although
still very, very impressive.

Ultimately the key factor in Veo users choosing one
over the other may come down to cost. I’ve previously talked about not being
able to justify funding the Enlite full-time and that’s still the case. The
Libre however is teasingly much cheaper. For full time use £1200 is a lot different to
£3600.

I’d hoped I’d be able to get to the bottom and make a
simple logical judgement on which is better. But I can’t. Yes the Libre wins by
49 points to 43 but where the Enlite wins on alerts and not needing to flash is
a huge factor.

So I think I’ll leave it to you to make your own mind
up on what’s most important to you and I’ll lob the ball into Medtronic’s court
to win me over with the new products they’ve got lined up in the coming months.

Game on!!

PS. Thanks for sticking to the end. It was a long one
but I hope you found it interesting.

Monday, 15 September 2014

Don’t you love the confidence I’ve used for the title? Part 2 will/should follow in a couple of weeks after I’ve got a decent length of usage. However I’ve had the Freestyle Libre for a few days and it’s getting heavily promo’d at the moment so time for a few quick thoughts and information.First up I need to make clear the contributions made towards this piece. You may notice my blog has no advertising and I’ve never accepted payment for any pieces written – I can guess you’re not too surprised by this as any payment would not have been good value for money. This piece is slightly different though as Abbott Diabetes invited me down to a members club in central London last Friday and paid for my train (Standard Class – prefer First Class next time please;) ) and also provided coffee, fizzy water and a rather tasty fruit danish that I later discovered I’d under-bolussed for. At the meeting with some other bloggers I was given a Freestyle Libre handheld device and two sensors. The only agreement that I was happy to sign was that they requested I write a couple of blog pieces and withhold them until today. Apart from that I’m free to say what I like and no promises were made by me and the grilling I gave the very nice Matt, Ollie and Fiona showed I wasn’t easily bought.Anyway time to get going (I've got quite a lot of photos so to make it easy I've put them all at the bottom)….As I tweeted last week the hype for the newest entrant to the CGM market, the Freestyle Libre was reaching silly proportions and as it coincided with the latest iPhone release the excitement was comparable. It did get to the point where I forgot which came with a new camera and which could measure my blood glucose – Apple; combining both would be nice by the way.For those who have missed it Abbott Diabetes have launched a product called Freestyle Libre that they say is not a Continuous Glucose Monitor (CGM) but a Flash Glucose Monitor (FGM). A little more on this later but it shares many features that other CGMs do have. The launch came after European safety clearance in early SeptemberThe nice people sat us down and began the session blasting us with wondrous facts. All very ‘marketing’ and I’ll summarise the bits I managed to jot down in case it interests you. If like me, you really just wanted to skip on to the fitting part feel free to do that….

•5 years in development

•2 years of clinical trials

•It seems to be officially pronounced Lee-bray. Although as it’s missing an accent on the e and I’m from the uncultured northern end of the country so for me it’s Libre to rhyme with n.

•Abbott Worked with a high number of Diabetes Specialist Nurses and consultants before launch and provided plenty of samples around the country for them to look at.

•Each sensor lasts 14 days before timing out.

•The sensor takes a reading every minute it’s on the body and stores this data for eight hours only. The reader downloads the full eight hours of data every time it is connected by swiping. Upon swiping the last reading is shown along with a trend arrow showing which way the glucose reading is going.

•The sensor goes on the arm. Only registered for use there and I sense this may partly account for the promised accuracy levels.

•Each sensor costs £48.29 ($78)(all prices are excluding VAT as dedicated medical kit is VAT exempt for people with diabetes).

•Reader cost £48.29 ($78).

•Reader works between 10 and 45 degrees Celsius – 50 to 113 Fahrenheit

•Despite the hard sell to Diabetes Specialist Nurses this is not available on the NHS and knowing how NICE funding works I wouldn’t expect this to arrive quickly; even if it is desired by Abbott. Whether this turns the promoted-to DSNs into unofficial and unpaid reps for Abbott is a debate for another day.

•The Libre is licenced for over 18s only. They are “committed to actively pursuing a paediatric licence too” but no promises were made about when.

•The sensor is waterproof to 1m for up to 30 minutes. IPX7 standard.

If you’ve been here before you’ll know I also occasionally run an Enlite CGM sensor from Medtronic. I pay in full for this and as a comparison they cost £55 ($89) per sensor and last 6 days (officially). The bluetooth transmitter costs £490 ($794) and that lasts anything between 12 and 18 months. I also know there’s a big fan base for the Dexcom G4 but as I’ve not used it I can’t and won’t compare. I'm sure Grumpy Pumper will though.Upon opening the box of the Libre sensor and inserter I was struck by the amount of plastic needed for such a small piece of kit. Apparently all needed to maintain the factory calibration, anything less can lead to poorer results. It still seemed a little wasteful though; we throw far too much packaging away managing diabetes! To place the sensor in the inserter is an easy process of lining up two lines. The next step was unsettlingly easy. The inserter was pushed against the skin and despite no noticeable sound or feeling, on removal a £2 coin (1 Euro) sized white sensor was left behind. I’ll pause here because that was pretty big for me. The Enlite can be a little painful going on; similar to an uncomfortable set-change for those that use an insulin pump. The lack of feeling is a huge progression so well done Abbott with that. A lesson learnt for me was that I should have placed it slightly higher up my arm. As it is it's just below my t-shirt sleeve position so next time I'd go higher to hide it completely.We then got our hands on the reader. About the size of a small phone it comes with one button on the front lower-right, a touch screen and a slot at the bottom for the Freestyle Optium blood and ketones test strips. Nothing on the back apart from a QR code (that I'm struggling to scan), a serial number and a few other symbols including the all important CE mark. On the side is the charging socket which is the same connection as Blackberry and Nexus chargers. The re-charging means the unit is warrantied for 2 years and I shouldn’t expect this will be a problem. The menus on the touchscreen are relatively simple and easy to operate. You can see past readings, a graph of day long periods and other charts and reports. There’s also a teasing ‘Professional Options’ selection that needs a passcode. A check of the solid instruction book showed this is for a bolus calculator so just like the Accu-Chek Expert I can understand reluctantly, the regulatory need for a HCP’s input here. For me I wouldn’t use it but I can imagine multiple daily injecting users would be as excited by this feature as I was with the Expert. However, the world being what it is I wonder how long it will take others to spread the code? I’ve a feeling that before I publish this it will already be out there!Then came the painful wait for an hour while the sensor warmed up. The time came with a teasing clock that counted down the minutes until it was ready. During this time Matt talked us through the reports available when you connect the reader to a PC or Mac that will be available after go-live. All are PDFs and the reader can store up to 90 days worth of data. It was explained that all reports had been developed after talking with the healthcare people about what they like to see when meeting a patient. This was where my ears pricked up again and I got a little annoyed. Apparently only 5% of patient users would desire the need for access to the raw data to analyse it themselves. In our group of five bloggers, three of us immediately said we expected it, not just desired; expected! So I’m hoping this will be taken back to enable a simple csv export to be made available. For me it comes back to it being my glucose reading and therefore telling me I can’t fiddle around with the numbers is retreating back to a world where the HCPs own my diabetes. They don’t; I do. And if I’m paying for my data to be collected I expect to be able to analyse it in a way that is useful to me. I wait with anticipation for developments here.There were many claims of market leading accuracy and for those who are into the technical stuff they claim a MARD of 11.4%, with a slightly worse value of 15% on day one. However, they are confident the accuracy is maintained for the full 14 days. See part 2 for how this does.So after an hour the reader beeped and I scanned my arm for the first time. To do this you wave the reader close to the sensor and it reads it. This can be done through thick clothing and I can confirm it works through a combined shirt, jumper and jacket with no issues. It’s certainly a strange sensation and one that still doesn’t feel natural three days on. When you scan the handset either beeps, vibrates or both and immediately shows a reading of your glucose. As the sensor is reading your interstitial fluid it will have a delay over the a finger prick test but in my tests so far I find this is between 6 and 8 minutes compared to 10 to 15 I experience with the Enlite. Why and how I have no idea but in my real world tests it does appear to be both accurate and fast. Fast enough to base a bolus on? I’m still not 100% confident but certainly more so that with the Enlite - in initial tests. So why have they named it FGM and not CGM? I’m not sure why as it does read continually, just that the results are only available when you flash, only stored for 8 hours and you can’t tie a specific time to a glucose reading if you haven’t flashed - a-ah, you saved every one of us! So in reality it behaves more like a blood glucose meter taking multiple readings when requested and separately creating a background graph that can’t be drilled into. The biggest feature of the kit is the ease and speed of use. It works, simply and easily. Big advantages in set-up costs compared to other systems but at this point I need to step out of the bubble and point out the blooming obvious. Close to £50 ($80) every other week is not a cheap option. Yes, it’s cheaper than the Medtronic system but that doesn’t mean it’s cheap. To enable full time usage will cost £1250 ($2025) per year. That’s the price of a small car! This is where cost becomes a deciding factor in whether you can justify it either full or part-time. Me? I’m not sure. It’s certainly more affordable but there are negatives that go hand in hand with the positives. I will explore these further in my next piece when I plan to run the Enlite and the Libre side by side to compare both items with accuracy, ease of use and further practicality.Thanks for reading and please check out Sue at Desang, Mike at Every Day Ups and Downs, Grumpy at Grumpy Pumper, Laura at Ninjabetic and Jen at MissJenGrieves for their feelings of the day and Libre so far. On a personal note it was great to meet so many people who I’ve chatted to online frequently but never actually met in real life! Hopefully we can do it again soon and involve even more.Thank you to the Abbott team for the invite and I appreciate the time your team took to talk to us and answer our probing questions. I really feel I’ve only touched the surface and looking at the other blogs I appear to be missing style or structure but I went for a brain dump of the biggest order and this is what you've got :) If you’ve got any questions at all please don’t hesitate to ask.More info also available here: https://www.freestylelibre.co.uk/Don't forget to check out the photographs below.Dave

Friday, 29 August 2014

I know I've not not been here for a while so as always many apologies but as I seem to say that each time please accept this as my permanent apology for slack updating. It will save a paragraph from all my future rambles. Yay!I've been thinking for a while what can I write about and then in the words of Bart Simpson from the '80s "inspiration hit me! (02:11)" No, I won't be having a party, it's all about what winds me up most about having diabetes following me around. There's plenty that could depress about the D monster. Having to stab myself to varying depths every day is a pretty big drag. I like my skin without holes but the continual need to either put some liquid in, draw some blood out or leave a thin piece of plastic or metal in at all times of day can be totally draining. But mostly it's just boring. Yes the finger pricks hurt but in the bigger scheme of things using the sharp stuff doesn't worry me too much. And if I changed my stabby thing's stabber more than 8 times a year it would probably hurt even less. For those of you that don't believe it you CAN change the blade in the finger pricker more than a few times a year. And if you speak to your local HCP they may even recommend you do it every time! Madness I know but I've been told it's true!!!!!Next on the list of pains is flattening the curve of BG readings to as steady a level as possible. This involves performing a continual juggling act to balance the insulin I'm shovelling in against food with too many variables to mention. I'll try to mention them though: exercise, time of day, temperature, carbs in the food, type of carbs, fibre in the food, alcohol, infections, stress, weekend or work day, colour of my socks and whether it's raining. OK I may have made the last two up but you get where I'm coming from. It can be a challenge. And what's the consequences of failing to achieve the perfect balance. In the short term it's either being high or low which are normally fixed by fruit pastilles or more insulin. Again this is all inconvenient but in that circle of life we're all part of, there's worse. Did I just say that? In the longer term the worries are slightly bigger with loss of limbs and eyes being a constant background worry. As I wrote about last year, it can get very stressful but again I just need to handle that and try and minimise the risks. I think I'm reassuring myself with the CGM and the low glucose warnings are also a very useful nudge when things are going a little out of control. So what is it that really gets my back up and makes the living with diabetes such a pain? The observant amongst you might already be putting your hands in the air and wanting me to ask you like at school. But just in case you hadn't bothered to look at the title the answer is (drumrollllllllllll)....... Time!

Really? That's my biggest annoyance with the day to day living of a 24/7 condition? When things are going relatively well, yes. It takes time to do anything, everything and it's just so frustrating. Examples below:Appointments - About four clinic / hospital appointments a year means taking time out each time to firstly go for the blood test that will drive the tone of the appointment and then a separate trip for the appointment itself. As I live 6 miles (I realise it's not that far really) away from the hospital it means each trip involves queuing through the traffic and then spending 20 minutes looking for a parking spot because I refuse to pay £2.50 to park - that's your fault parents! It all takes forever; sitting watching life disappear until I manage to get the golden fifteen minutes that are very useful when I actually speak to the HCP. Half a day is easily lost each time. Add to this the eye tests that involve dilated blurryness and we're up to 2 and a half days a year mostly sat around for a combined couple of hours of expert opinion. Prescriptions - That's another trip to the doctors at a frequent interval. Here I'll admit I am lucky though. My local GP has online prescription renewal along with decent sized quantities meaning the ordering is only monthly but very quick. Collection again is fairly easy as the linked pharmacy is open 7-11 six days a week and 9-5 on a Sunday. Blood testing - Testing up to lots of times a day is a total faff. Grab the machine, extract the strips from the container, put the strip in the machine, take the strip out again and put it in the right way up, prick the finger, try and prick again when the blood fails to appear, admit defeat and use the gushing fountain that is the little finger, wait 5 seconds, smile or cry then correct with insulin, eat or carry on. You’ll notice I saved 20 seconds there by not replacing the stabby thing ;) Now, don’t get me wrong this is a world away from the 2 minute wait of doom that the old BM sticks gave but it’s something else to add to the list of things to do. (As a side note the big blue Reflolux is still for available to buy!!!! - Although looking closer the Reflolux S was the second generation white model not the blue one pictured here #geek).Carb counting - Grabbing something to eat in a hurry isn’t the high speed efficiency I wish it was. First up comes the blood test as above and then the magical art of counting carbohydrates in the item of unknown weight when the 'helpful' nutritional info shows carbs per 100g. Thankfully Fred the Pump does the hard work of working out the insulin amount to give but there's usually a bit of thinking involved based on the type of carbs going into my body. Pasta takes forever, rice even longer and pizza is a dark art only solved when eaten at the same time as consuming lots of beer - you may mock this last note but it worked last week so I'm sticking to it!Buying stuff - Wait, I hear you say, everyone has to buy stuff. Yes, that's right. But have you ever tried to fill out an insurance price comparison website when diabetes is involved? Health, travel and car. They are all as equally frustrating although thankfully car insurance seems to be getting easier nowadays.

Supplies - As I said before standard prescription stuff direct from the GP. Pump stuff though comes directly from Medtronic in two ways. With sets and reservoirs I phone my health authority who then order it with delivery date unknown. With CGM I phone the nice people at Medtronic and they kindly relieve me of a wedge of cash and then send it out giving me an approximate delivery date. Thankfully I work from home three days a week so it's not often I have to make a special effort but again the call, signing and then reorganising of the shelf takes even more time.Correcting lows and waiting to come back up - This ranks as one of the biggest pains in the bum. So I've felt low and confirmed with another blood test and eaten some fruit pastilles; I then need to wait around while my BG decides to take it's time to return to a level where I start to feel normal again. It's only ten minutes or so but while life is happening around me that's time that's annoying to lose. In reality sitting and waiting for it to come back up isn't what normally happens. The usual scenario is that I carry on doing what I need to do hoping that I can blag it through the next ten minutes without my weakened performance being noticed. I'll admit here to not knowing if anyone really notices the difference!Changing sets and sensors - Another 5 minutes faffing around just to ensure life continues as normal. If scheduled this isn't too bad and I'll usually leave it until a quiet moment. The real killers are the unexpected disconnections thanks to door handles or buggies! These are reeeeeeeeally annoying as it's guaranteed to happen when I'm rushing around; hence not watching the tube closely enough. These need a full stop to find the set-change stuff and do it while hopefully not under any extra time pressures.Forgetting stuff - I'll admit to blaming diabetes for this one but I'd probably just forget something anyway. However must trips out with the family involve me getting to the car, or half a mile down the road, and then returning to the house to pick up the spare sets, fruit pastilles and testing kit that I left by the front door so I won't forget them.The Diabetes Online Community aka DOC - What? I hear you say. How can we be blamed for wasting your time? Well you aren't. Really. Well a little bit. But it's sort of in a good way. Without the support of my close family and you, my online family, living with diabetes would be much, much harder. I love interacting around the world and having conversations with people I've never seen. Being able to share, give and receive advice and support is priceless and, I've said this before, as valuable as my infrequent contact with healthcare professionals. However, this does take time and I'm not pretending I'd be more productive in the other time but maybe instead of writing this blog I could be finding a new renewable energy source to save the world. No? Oh OK, I'll leave this one here because I'm not complaining it's just another example of something that takes time.All the events on their own they are just steps in time but they add up to a constant background waste of time and it's the thing that just gets me a bit down in the D world.Thankfully I have a wonderful wife, kids, parents, sisters, brothers, in-laws etc to put everything in perspective and realise that all in all my life's not that bad. All in diabetes has it's ups and downs but without I wouldn't have you here so it's not too bad. In fact, it could be far worse and following the wise words of Mr B Simpson earlier we'll finish with even more wisdom from Mr E Idle....

Friday, 14 February 2014

Time for another update. It seems my blog is in a circle of updates at the moment but bear with me as this one contains exciting new news. Well exciting for me; maybe slightly less so for you!In November I was having a quandary about whether to dive in to the world of CGM. Would I and Should I? Whilst I desired CCG funding and not having to pay for it it became clear that if I wanted one I would have to use my money to do it. As I said at the time I understood why this was the case and begrudgingly accepted the short-term cost reasoning. In between then and now I had an appointment with my consultant and as a preparation for this I managed to persuade my wonderful DSN to let me borrow one. This was also paired with a few nighttime issues so it had a clinical need too. My control with the CGM was as tight as I've ever seen it. I'll come to theories on the reasoning for this in a moment. As a comparison my estimated HbA1c with the CGM on was 5.7%. This compares to the bloods taken at my appointment which showed 6.8%* for the previous few months. I understand (and have written) about how poor a measure the HbA1c test is but it does indicate the reduced number of highs and as it's the only measure available it's the one figure that can be used to compare.*As a sidenote the 6.8% was the first I've ever had that began with a 6 so I was very excited by this!So I was lower; but why? As the sensor was a one-off had I altered my behaviour to keep the lines in the lower parts of the graph? This has been a constant question in the back of my head. If I had a CGM for a longer period would my food behaviour return to a more 'normal' level and therefore provide a more accurate view of my BG levels? I think there would be that constant nagging in the background and the ability to tweak ratios and basals after seeing a long-running trend is, for me, highly valuable. Was my behaviour also affected by knowing that Barney or Mr Rockwell were coming up and I was keen to be a 'good boy' when sat in front of them? Again this is a possibility but I need to understand how I'll behave if I know that the only person seeing my graphs is me. I do think that my obsession with numbers will help me to maintain a lower average than I've been experiencing with blood testing alone. Could this be something I find out over time?So did any of this help me to get closer to an answer as to whether buying a CGM and sensors would be good for me? In short, yes. The deciding factor for me were the graphs seen during my pre-appointment sensor. Compared to my scatter gun of dots on the same graph from BGs in the weeks before that the difference was significant. There are also the benefits of my BG (15 minutes ago) being viewable at a quick glance. I'm involved with a junior football team and last week I had an annoying hypo that resulted in me asking the boys to change coloured bibs three times in five minutes and an exercise that was a little bit unorganised. To be fair to the boys once I twigged what was happening and just told them to play a match whilst I chomped on Fruit Pastilles they didn't really notice. But I did and I felt strongly that I let the boys down. Being able to spot that trend earlier would be very helpful for me. Paired with a strong desire to get back out on the road doing long-distance running with a strong fear of hypos on the run. CGM wouldn't stop the low but it would help me build a strategy much easier than by testing frequently whilst speeding (OK, staggering) along.However, there's still a significant issue of cost. Even with the free transmitter offer from Medtronic the £55 per week is still a huge chunk of money in anyone's wallet. I had long repetitive conversations with the wonderfully supportive Mrs Tangerine on this point and it came down to this. Do I think the sensor will improve my control? Yes. Will this consequently reduce the likelihood and impact of complications in the longrun? Yes. If it was my son or daughter with the diabetes would I hesitate for a second? No. Can we afford or justify the cost full-time? No. Part-time? Just about. In her words "Just get it bloody ordered. You know you want it and it will be good for you and therefore good for all of us."The plan is to order the first five and use one or two a month to try and build up some meaningful data. The deadline for the fourth box free offer is 31st October so that should fit in quite well with my planned usage.A few calls and emails to Medtronic and my DSN and the order is in. I'm hoping for the new improved Enlite sensor but that is still under discussion with them.So that's where I am now. Once I've had it running for a while I'll update on whether it's worth the considerable cost.Thanks for reading.** I'm very aware that CGM is not viewed by all as a useful tool and some believe they can achieve similar if not better control through MDI + blood testing or pump + blood testing. That is fine. Really. This world we live in is filled with different people and what works for me, both in my head and my body, is the most important factor for me. What works for you is the most important thing for you. I'm not wrong, you're not wrong. We're just different. In a good way!*** Slight addendum required after a callback from Medtronic today. Although the new improved Enlite Sensor was released on Monday I received the older version on Monday. Because it had left Medtronic's possession they are not allowing them to be returned to be swapped even though the seals on the box are unbroken. Obviously I am a bit disappointed by this but will hopefully get chance to review the new version when I buy the second box. Hey ho.Dave

Sunday, 9 February 2014

Time for a follow up to my blog post from August about a fictitious appointment for Fred when he was seen by Barney at the local hospital. The end of this was that Barney would be contacted within six weeks by his Diabetes Specialist Nurse and then would return to see Barney six weeks later to judge success from the fantastic and considered tweaks proposed.Continuing my attempts at fiction I’ve decided to develop the story five months on (Booker Prize here I come!) .…. Life goes quiet for Fred in the meantime but then he receives a letter advising that he has an appointment at the hospital again. This excites Fred as he really wants to share the work he’s done over the last few months to try and improve his overall control. However, paired with this he’s been experiencing persistent lows in the evening which drop further into the morning. He knows that a CGM loan from his DSN will help to try and identify the cause and also help to convince him about their use in the long-term. Like myself he has a belief that they would assist his overall control. Thankfully Fred’s DSN agreed with his request and one was fit for the week before his appointment at the hospital. It was really useful to Fred as it showed some areas to work on and also highlighted a few good points about his control too.Before the appointment it’s expected for Fred to get a full set of bloods done but after the appointment in the summer he was nervous about this as he wanted to talk about a few things. Also his annual Christmas virus meant that for two of the previous four weeks he ran unusually high and he was convinced a higher than fair HbA1c would reflect incorrectly on his overall control. Because of these factors he took the slightly naughty step of avoiding the bloods being taken before the appointment but would be happy to have them taken that day for consideration afterwards.After speaking to his DSN beforehand on how to ensure he avoided Barney again. Tactics were given and upon arrival Fred expressed a desire to three different professions that he wanted to see Mr. Rockhead today; not Barney. Something along the way worked (I think it was DSN 1 and 2 combined that fixed it) and Fred took his numbers and questions in to see Mr. Rockhead. A good discussion was had by all and the consultation was a conversation and discussion in contrast to last time’s lecture.The results were that some tweaks were agreed and Fred was happy with the outcome. Fred was convinced that his thoughts had been considered and because of this he bought into the suggestions offered. It was a win-win. Without this buy-in then walking away from the appointment Fred would know what he’d been told and he may have made the relevant changes to his insulin but within days or weeks the willingness to push for improvements just disappears. Following Fred’s appointment with Mr. Rockhead he’s convinced the changes are a good thing and is still doing those things.I hope you liked today’s tale and I also hope you don’t experience a Barney but meet with a Mr. Rockhead every time.That’s all for now though please come back very soon for an update on my previous post about my thoughts on CGM.Dave

Thursday, 9 January 2014

Happy New Year everyone. Hope you had a
good one and if you were watching the BGs (or you should have been) they
behaved whilst you didn’t!

For me it was the annual body shutdown
where the work tension of the previous weeks finally leads my body to say when
I stop for the holidays that it’s time to shut down and just make me feel
crappy. Hey ho. Apart from the seasonal bugs a good Christmas was had by all
and the kids were suitably excited.

From a diabetes point of view I struggled a
little. After ten days running a temporary basal of 125% and still having
constant BGs of over 10 I decided to deal more ruthlessly and go hard-core. A
new basal profile was created that ramped it up a little more and this seemed
to do the trick. As my body has got rid of the sniffles the new basal is being
tweaked downwards and I’m getting closer to where I’m normally at. So in
summary; D getting in the way but not enough to spoil a good time of year.

Today’s rambling stream of words relates to
something I’ve been thinking about quite a lot recently and two things that
happened today scare me a little even though individually they were nothing
special. By a miracle of some higher being I’ve managed to sustain all limbs,
eyesight and internal organs to a level of working quite well although the
pancreas is still on it’s permanent vacation. As I said I’ve been considering
this topic a lot lately and can probably put it down to a midlife crisis and
realisation of my own mortality. As a side-note my son this week called me the
most embarrassing and uncool Dad he knows. I’m still removing that dagger from
my heart as I was fairly certain I was pretty funky, but probably me thinking
that proves I’m not! I’m also aware I’m very lucky my body is still working pretty
well. The improved control over the last three years has helped I think but
increased communication in the fantastic DOC also highlights that bad stuff can
happen. So what happened today to make me all morbid?

Firstly I was filling in a paper form at
work. This wound me up for a start as I prefer everything computer based and my
handwriting is questionable but as I was completing it I was a little conscious
that I was struggling to see some of the words clearly. For a while now I’ve
been struggling in low light situations to read very small print and even
though the eye Doc (in November) told me to just get some glasses as I’m
getting on a bit it brings immediate thoughts of retinopathy and the removal of
driving abilities etc, etc. The fact I had the photo taken so recently should
reassure me but the nagging worry is still there that the years have finally
taken their toll on my optics.

The second event was when I was coming out
of the supermarket after buying some, now eaten, rather lovely Italian plum tomato
& mascarpone soup. The tip of my right forefinger suddenly felt very cold,
tingly and slightly numb. Immediate thoughts turned to peripheral neuropathy, loss
of feeling and impending amputation. After driving home and warming the finger
up, feeling returned pretty quickly. It’s been fine since but it’s another of
those things that just adds to the background stress of what we deal with on a
day to day basis. Mrs Bee suggested I get checked in to the GP but me being me
I’ll probably hang on until it happens again or I’m next at the hospital in a
few weeks.

There are plenty of examples of wonderful type oners with long lives and no complications so it's not inevitable but that doesn't mean I won't worry about it a lot - whilst still being the uncoolest Dad in the playground. Ouch again!

Maybe I can talk about these points at the
hospital at the end of the month but as always that depends on how the appointment goes. Wonder if I’ll
see a Barney?

I know both of the things above are minor
and I speak to plenty in the Twittersphere who sadly are in greater pain or
discomfort but to me it’s a very major worry about what’s coming up. The early
decades of being warned I’ll die young and without working organs have had an
effect. I know without the never-ending support and love of my wife and all my
family my head would be in a much darker place and so to them I say thank you
very much. The complications may come but if and when they do I just need to
get my head down and deal with it. There’s no guarantees in life apart from the
inevitable but I don’t plan on getting to that point for many decades yet!

Finally two totally unrelated points:

1: During a meeting today at work when we
were talking about hobbies and development a wonderful colleague of mine said
that as it’s a new year he wanted to try some new things. Things such as yoga
and amateur dramatics. A few puzzled looks and the obvious question of “Why?”
was asked. The answer was perfect and summed up how life should be viewed,
“Well, I’ve never tried either and I might be really good at them but if I
never try, then I’ll never know.” I found that quite profound and the perfect
way to look at life. Why stop yourself from doing something you’ve never done
before? You might be a world leader in that field. Genius!

2: Five days ago a person I’ve 'met' on
Twitter called Jenny celebrated her 50th anniversary of having type
1 diabetes. When I passed on my congrats and awe her reply was simple “When D
days are bad I don't over stress. Perfection isn't life & tomorrow is
another day!”. Another gem and a fine piece of advice for all of us.

Thanks for reading and if you’ve got this
far reward yourself with a pat on the back.

Disclaimer - please read!

I am not a medical professional in any way. Nothing on this site should be construed as medical advice. Your diabetes will vary. Contact your health care provider for specific questions and advice. Without sounding like a pharmaceutical company – do not change medication, dosage or philosophy without speaking to your DSN, doctor, consultant or witchdoctor.